Wives of husbands with Stage IV Colon Freaking Cancer

[AngelaN]

For those of you who have been doing this a while....
How do you tell people that what they are doing is not helping, and in fact they are more trouble than their "help" is worth?
DH is having a very slow recovery. His wound is healing well in one area, not well in another. His oncologist wants a CT tomorrow and possibly chemo to start again next week. In the meantime, I have someone at my house every day to help my husband. But to be honest, they are more trouble then they are worth. My sister in law made dinner today at 4pm. So she eats at 4, and then when I get home at 630 I am left to heat up the food,prepare the plates, clean up the kitchen, take out the trash, do the dishes. Some help that is.
Last week I get home at 630 and my mom asks me what I am making for dinner. She didn't want to make something because she didn't know what I wanted.
This am I needed to do some things to prep for a meeting but I couldn't because my sister in law was sleeping in my office where my printer is.
I know I am whining. At least I have some people around. But when I get home, I am still doing everything. At this point if I don't do it it doesn't get done - dogs, laundry, dishes, food prep. I have resorted to grocery delivery and someone to clean the house every week because I just can't do anything else.
I can't go out with friends because my husband wants me home. I was on the phone tonight for an hour with my cousin and he stormed off and went to bed because I sat next to him on the couch when I got off the phone and woke him up.
Our friends have pretty much gotten back to their normal life, and tell me "they don't call because they don't want to bother me". At this point I get it. You don't want to be around this. It's a bummer to be around a guy and his wife whose life is about meds, and doctors appts and surgery and chemo. But that's our life right now. And it sucks. But that's how it is.
Anyone else in the same boat?

[WifeOfMike]

AngelaN.........

YES friends can be dim-witted when it comes to actually "being a friend" when it comes to "the BIG C". I have known a "close friend" for a little longer than I've known hubby..... 34 years. I have listened to her trials & tribulations, including several hip surgeries, other "scares", and lots of life's pains in the butt....etc, etc. I have listened, encouraged, laughed & cried with her every inch of the way.

Half way thru our chemo journey things "changed". She still calls, happily yacking & venting about whatever..... then when it comes to my turn...... she cuts me short, & either turns the conversation back to her.... or conveniently "has to go because_________ (fill in the blank). She also gave me poop about mentioned forgetting to make a fruit smoothie for hubby and getting up at 1:30 to make it (he left that morning really early). HE LOVES THEM..... we have a whole routine of stuff I have ready for his "breakfast". It makes his day.... AND he actually told me that night that he heard the blender whirrrrrrring late at night and smiled 'BECAUSE SOMEBODY LOVED HIM". HEY.... if it makes him smile......... I'm going to do it. After her telling me that I was crazy and he could have done without........... I conveniently "had to go because_________ (fill in the blank). Turn about is fair play right?

Don't think I will be calling her for a loooooooooooooong while............ or just keep up my new routine to see if she "GET IT"
YES life is a series of appointments, research, and other FUN stuff. Think i need a short jaunt to Nordstrom's

Wife of Mike,
Vicki

[Marian1961]

It took me awhile to learn that "helping" people required direction. We have a neighbor who is a saint. She slips in and leaves dinner sometimes. We went to chemo recently and she zipped in and mopped the floors! The other side of that is my sister who calls once every two months and wants to know if "all this treatment is over yet so she can visit". Really? I can't even write here my response to her last call. In between those two examples are the ones that think they are helping but are, as you point out, creating more work or angst or general upheaval. I try to give specific direction to them now. I don't have the energy to form pleasant, save their feelings, moments of false gratitude. I also truly think people don't KNOW how to help in a meaningful way and are glad for some direction. If people say "what can I do?", I tell them.

[WifeOfMike]

GREAT advice Marian1961!!!!!!!!!

I'm leaning that way too. Otherwise I'm going to start baring my teeth & growling (maybe even bite somebody)
I have a friend like yours that is a SAINT. We have both had some lulu's.... we have Always come thru for each other. Now that is a FRIEND!

Wife of Mike,
Vicki

[AngelaN]

Glad to know I am not alone! My best friend came over on Sun and I laid it all out. She has organized dinners to be brought over three times a week. My husband has actually started to perk up a bit and so that actually helps me feel good. My mom also told me this week that during the day he is pretty self sufficient and when I get home he become helpless. I think that is more about him wanting my attention.
I will be telling my husband's best friend that I am extremely disappointed in his behavior. He has come over one time in a month, on a Sunday when I was home. He came over during chemo 1 time. I am going to take everyone's advice. This is no time to worry about hurting people's feelings. My husband's feelings are hurt too.
Gosh this is hard. And chemo might start again on Wednesday. I really am not ready for chemo again. His CT this week showed no new lung mets and maybe a small progression of the 3 he has. They are all under 1cm, and all in the left upper lobe so really amenable to surgery. I would be willing to do chemo untii lung surgery, but we are not doing chemo without a plan for the lung.
My friends keep asking me how I do it, but honestly how could I not? I spent 10 years of my life in a marriage with a man who eliminated my say in everything I did. I married my husband 3 years ago and I love (just about) every minute with him. I will do everything in my power for him to get cancer free.
Ladies, stay strong...

[stephenlamb]

F#$?? Cancer!!!!!!!!!! I hate it! The one true love of my life is fading and I am helpless watching. I met my beautiful wife when she was sixteen and I was seventeen. We both went to a music festival out of state with 25000 other people. Somehow we met!
Then to find out we live over an hr away but nothing could stop us. What r the chances of meeting ur soul mate amidst 25k other people just for it to end like this! We never had kids we were to busy out adventuring from scuba to skydiving to whitewater kayaking.... I'm just helpless and can't comprehend that there is nothing we can do! So sad

[AngelaN]

And Men stay strong too...
StevenLamb - I am so sorry to hear about your wife. I don't get why this happens.
The one good thing that has happened with all of this is that my husband and I have a bond that will never be broken. I swear I can hear what he is thinking sometimes. And that is a very good thing.
And tonight I learned he likes milkshakes made with boost and chocolate ice cream.

[stephenlamb]

My wife has recently been prescribed marinol which is man made thc and she has been up n the middle of the night munchn on vegan chocolate cake and it has helped the nasua a lot. Why the haven't prescribed it b4 is beyond me. Thanx for the response. The bound u get is amazing when u truly take nothing for granted.

[Marian1961]

Stephen, I'm so sorry you and your beloved are having to go through this hell. It's unfair at any age, but you guys are so young it feels particularly unfair. I'm glad the new meds are helping with her symptoms, surely the midnight chocolate cake is helping!

[wandalein]

Wow, now I am getting nervous. My husband will be home on Friday or Monday from Liver resection after being in the hospital since his birthday on June 16th to have 80% of his liver removed. He has had a rocky recovery and a couple of setbacks. I have only wanted immediate family in the hospital, me, the kids, his mother and sister so he can rest and not feel like he has to visit. I have actually had family and friends want to stop into the hospital and visit him and when I tell them that he needs his rest they decide to do it anyway.

I am better after the weekend but by Friday evening I was so put through with work, where I suddenly have a new position to learn for and am part of a different project that involves more study to be an expert and some travel, my home and a 16 year old who has just finished school for the summer and is taking advantage of the newfound freedom by having friends over for feeding fests and gaming or keeping tabs on him while roaming all over the city with them and of course the hospital visits in between all that. Also, the endless phone calls and messages I have to return from well intentioned friends and family from near and far who want to be updated. On Saturday evening after the hospital I actually lit a fire in the outdoor fire place, in a gesture towards summer solstice and the longest night of the year. I grabbed a bottle of wine and never took a phone with me, just listend to music. It was great. Then when I was going to bed and I checked the messages and people were actually calling as late as 10:45.

I plan to have evenings like that with my husband as soon as he is up to it. I never thought much about it but before his surgery we kept busy going out for dinner, music concerts, live theatre and wonderful shows, but my mother has recently praised me on what a great way to deal with things. I think sometimes we have to remember the beauty in life and take what relaxing moments we can get to escape our worries. I have certainly learned to live in the moment because if I think about it all I would be immobilsed with worry.

[AngelaN]

Wandalein,
Coming home was difficult for us. Everyone wants to come over the first week. Set boundaries. Your husband will need you to tell people no or when they need to leave. And I asked people not to come the first week, hoping to space out the visits a bit because I knew it would be too much. I planned tiny outings at first. Lunch at our club - mainly because I knew his friends there were dying to see him and it was a huge morale booster for him. But we stayed an hour, and left. Even almost 6 weeks out I let him tell me when we're ready and then I tell everyone I am tired.

We had a rough week. There is disagreement between Penn and UPMC at his CT done last week. Penn says he has 2 liver mets - one 2cm that the liver surgeon missed, even with Intraop US, and one new one. The liver surgeon says that if the radiologist read his very detailed op report, they would see the areas of question are where he operated. Even with the liver surgeon weighing in, Penn doesn't agree. It was completely demoralizing for DH, he feels like his oncologist keeps telling him he is going to die. He doesn't feel like the oncologist is expecting a cure and a few months ago when I pushed the surgery the oncologist told us he was on palliative chemo. At this point I am beginning to think we need a new oncologist. He starts chemo again after our vacation next week, which was always the plan. Then a f/u CT in 2 months. We are going with the liver surgeon's interpretation BTW, and in 2 months we want a plan for his stable lung mets - 3 in the LUL.
Has anyone switched oncologists?

[stephenlamb]

Ohio state would only treat my wife palliatively no matter how many times asked about seeing a surgeon or the hai pump. We always got( if I thought it would help we would do it)... Most onc can't c past stats and realize we just want a chance just a shot of no chemo for life. After our local onc, osu and Cleveland clinic we finally met with Dr.k. my wife had a two stage liver resection and was Ned for a bit. Was it worth? hell yes she wouldn't b here without that chance. Yes it wasn't a cure but it was a shot!!!!
I can't believe how pissed and frustrated we caregivers can get. Today after crying my eyes out on the drive home I had to resist the urge to pull over and just scream at the heavens basically throwing a temper tantrum......
O ya me and the wife got matching anchor tattoos yesterday. It also has a tattered blue ribbon tied to it. I think most of her family r going to get it.... Sorry for the rant

[Mojo]

Rant away. I remember several rides home screaming and crying with Windows up. It helped get some of the frustration out. Sometimes you just needed to get it all out so you can stay again.

[wandalein]

Thanks AngelaN I am feeling a little bit like a guard dog.

He is home since Thursday and already we had friends pop by. The timing of his release was pretty hectic. We were told he would be home on Friday, I was out of town for work on Wed. & Thursday. Imagine my suruprise when he texted me they were releasing him. Luckily his mother was able to pick him up and deliver him into the not so competent hands of our 16-year old son (who had friends over). Luckily the 24 year old ordered pizza for supper when he got home from work at 4:30 and I didn't get home till 8:30. It was a very challenging day (getting used to those )

Meanwhile, I think surgeons are so different than oncologists. My husband was fortunate to have a very brave surgeon. I have to look further into this but apparently he was told the surgeon went in expecting to take 80% but ended up taking only 60%, they could not believe how far off the original CT scan was when they got in there and there was apparently a lot less to deal with. They asked him if he did chemotherapy between the May 5th CT scan and the surgery on June 16th. Heck no, he didn't but up until 2 weeks before the surgery (when he was told to stop suplements) he was loading up on Oncolyn & Tumeric suplement. Now I am telling him to load up on it again now that he is home.

Stephen. Good luck, it really sucks doesn't it. Right now I am just keeping the sights set on the recovery from surgery, which is really going well.

[AngelaN]

Wandalein
so tell me about Oncolyn & Tumeric...I have called for an appt for DH for acupuncture for his neuropathy, and have done a lot of looking for alternative treatments, but have not heard of these two. Where did your husband have his surgery? And be a guard dog. Your husband needs you to protect him right now.
My husband's recovery has been a bit of a fiasco, but he is finally doing well, and his wound closes a little more each day. He was back to his old self tonight - singing "The Cancer Man" to the tune of "The Candy Man"...